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Thread: Brain Computer Interface for Quadriplegia and Paraplegia Improvement

  1. #21
    Quote Originally Posted by GRAMMY View Post
    National Science Foundation (NSF) : LINK is entirely a different federally funded area of science that researchers can apply for grants.

    The National Science Foundation (NSF) is an independent federal agency created by Congress in 1950 "to promote the progress of science; to advance the national health, prosperity, and welfare; to secure the national defense" With an annual budget of $7.5 billion (FY 2016), we are the funding source for approximately 24 percent of all federally supported basic research conducted by America's colleges and universities. In many fields such as mathematics, computer science and the social sciences, NSF is the major source of federal backing.

    We fulfill our mission chiefly by issuing limited-term grants -- currently about 12,000 new awards per year, with an average duration of three years -- to fund specific research proposals that have been judged the most promising by a rigorous and objective merit-review system. Most of these awards go to individuals or small groups of investigators. Others provide funding for research centers, instruments and facilities that allow scientists, engineers and students to work at the outermost frontiers of knowledge.

    This post about "Brain computer interface" would definitely fall within this description for funding. They don't fund medicine here at the NSF in the same way as the National Institute of Health (NIH) does. People tend to mix apples and oranges on these two organizations. They fund entirely different areas of "science". Grant money with the NSF in no way takes away from an NIH grant.

    __________________________________________________ __________________________________________________



    https://www.ninds.nih.gov/news_and_events/congressional_testimony/ninds_fy_2016_cj.htm

    You do not see a whole lot of national lobbying efforts from small non-profit orgs and charities for various reasons. One important one is that they're quite limited due to IRS rules about influencing without losing their tax exempt status. It's a very fine line. Without that tax exempt status, you probably wouldn't see much in the way of SCI organizations trying to help out. LINK.

    I understand the difference between that and NSF and the NIH.

    That wasn't my question. The question is what are the current 2016 funding mechanisms for SCI?

    I imagine that NSF could also apply some of this research to ALS as well. Regardless, why are we receiving so little funds? I also think it's a great disservice for the community not to be lobbying. May be different nonprofits need to be formed?

    So in 2005 when we lobbied Congress for passage of the CRPA; How did this effort damage the tax-exempt status of all the different organizations that came together? Since then we've been weak. So be quiet so small .orgs can exist? I don't think you were there then to lobby, so maybe you are not the best person to ask this question.

    Does anyone have a number on government-funded SCI research? Jim?
    Last edited by Chaz19; 02-09-2016 at 03:12 PM. Reason: edited for clarity

  2. #22
    @Chaz19

    From what I read, small charities do not spend all their time lobbying the federal government because of IRS rules. If that wasn't the case, every lobbyist known to man would deem themselves a charity and never pay a single income tax on the millions of dollars that corporations pay to them. They would think they've died and gone to heaven! To hire even one good experienced lobbyist is expensive and the person has to be on the ground in Washington D.C. Lobbying cannot be a charities primary function or the tax exemption from the IRS will be taken away. Small non-profit SCI charities can do a little bit of lobbying but they get spread very thin quite quickly. They still have to do the primary things they engage in, pay for and are working on in order for them to not be put on notice and end up being dissolved. That would help nobody! I don't know how to get the Internal Revenue Service rules changed. It would probably take an act of Congress if you wish to change the IRS rule and give tax amnesty to lobbyist.

    https://www.irs.gov/Charities-&-Non-Profits/Lobbying

    The passage of CRPA was a concerted grass root effort by many different people so no one charity was at risk and "there was no damage done". (Unfortunately, it passed with no funding attached to it too.) A lot of the actual work with planning and organizing was done by people volunteering that were not officially affiliated with any certain charity on paper. CDRF was able to supply one paid lobbyist for the effort just for a short while to help with navigating the channels. CDRF also had many other big projects and things they were working so it did not jeopardize their right to exist and complied with the law. Charities are not to be conducting their business primarily as federal funding lobbyist regardless of what you think they should be doing. It's the law and not what they were designed to do. I do not know about the rules in European countries however. Perhaps they are able to do whatever they please but it not the case in the USA.

    If you want to do lobbying, maybe you can operate a taxable SCI company and pay taxes. You would earn money through sales or services and then spend the leftover profits on lobby activity. There would be no problems from the IRS considering you a charity that shouldn't be in the lobbying business. Or, just directly open up a full time SCI lobbying service for vendors and pay your federal and state income taxes to avoid any trouble. Both would be legal but you'll want to consult an attorney for the business plan formation and your charter to comply with federal law and whatever state laws you have. The "Chaz's Lobby Service" is born. With the political climate for the past decade and foreseeable future, I have no idea if there could be any success. Congress is a total complete MESS (has been and will be...) I personally do not know of too many people that think federal lobbying for SCI will bear fruit from Congress with the current conditions. The NIH will not reallocate designated funds from lobbying. If you think lobbying is a good idea, by all means you could and should be doing it every day at the Capital. You could gather people to do lobby work in their spare time making calls and sending letters about upcoming relevant legislation for SCI.

    You can contact the NIH to get all the breakdowns of categories for SCI and the funding allotted since it appears nobody has the figure you're asking about and looking for. (I assume nothing in the LINKS I gave you is what you are wanting either). They also have information about patient advocacy committees that may already have a SCI component built into them. I don't know anything about their selection process or who is on them right now. You can ask the NIH about those kinds of opportunity when you contact them.

    Also, Jim may have information on New Jersey state budget for SCI and Matthew or Rob has more on Minnesota state budget for SCI and lobbying. Sue P. can give you more info about federal funding for CDRMP or DOD budgets for SCI. Their knowledge will help you a lot.

    Yes, I've been in Washington DC with my husband and son on a couple occasions but I'm probably not the best person to ask. Sorry I don't have more on the subject, it's just that lobbying in the District of Columbia really isn't my personal forte' due to my remote location, budget, time and lack of experience/interest. With living in a Republican state, I was lucky and got both Senators to stand down on their party vote in trying to defeat the CRPA. (It was probably considered pretty harmless with no money attached to it). You would make a great lobbyist up on Capital Hill and you should get started right away. It would be nice for you to attend a couple political rallies with both parties to ask all the candidates where they stand on funding for SCI. Maybe you could even get on national TV for added publicity. The timing for you to go is now! Good luck with it.
    Last edited by GRAMMY; 02-10-2016 at 01:27 PM.

  3. #23
    Quote Originally Posted by paolocipolla View Post
    Thanks for the clarification, is it correct that anyone with an injury below T10 may have damaged the lower motor neuron?
    I believe Wise has explained that before, but I could find where he posted about that.
    I have met people as high as T9 who have some level of LMN damage. Any injury below that point is much more likely to have LMN damage.
    An often overlooked point is that LMN damage can occur to specific muscles at any level of the spinal cord. For instance, someone with a C5 injury may sustain LMN damage only at the C5 level. Thus, their legs and trunk may respond beautifully to FES or some other kind of electrical stimulation, but because the lower motor neurons at the C5 level were damaged, their triceps will not respond to any type of stimulation, or have a greatly reduced response. This is also a big problem for people with damage from C3-C5, as the LMN that controls the diaphragm can be damaged or lost. Thus, their arms and legs may respond to stim, but the diaphragm muscles will have a greatly reduced or no response at all to stim. It is a rare but very devastating situation.

  4. #24
    Quote Originally Posted by GRAMMY View Post
    @Chaz19

    From what I read, small charities do not spend all their time lobbying the federal government because of IRS rules. If that wasn't the case, every lobbyist known to man would deem themselves a charity and never pay a single income tax on the millions of dollars that corporations pay to them. They would think they've died and gone to heaven! To hire even one good experienced lobbyist is expensive and the person has to be on the ground in Washington D.C. Lobbying cannot be a charities primary function or the tax exemption from the IRS will be taken away. Small non-profit SCI charities can do a little bit of lobbying but they get spread very thin quite quickly. They still have to do the primary things they engage in, pay for and are working on in order for them to not be put at risk for losing exemption and being dissolved. That would help nobody! I don't know how to get the Internal Revenue Service rules changed. It would probably take an act of Congress if you wish to change the IRS rule and give tax amnesty to lobbyist. Personally I think it's a poor idea.

    https://www.irs.gov/Charities-&-Non-Profits/Lobbying

    The passage of CRPA was a concerted grass root effort by many different people so no one charity was at risk and "there was no damage done". (Unfortunately, it passed with no funding attached to it too.) A lot of the actual work with planning and organizing was done by people volunteering that were not officially affiliated with any certain charity on paper. CDRF was able to supply one paid lobbyist for the effort just for a short while to help with navigating the channels. CDRF also had many other big projects and things they were working so it did not jeopardize their right to exist and complied with the law. Charities are not to be conducting their business primarily as federal funding lobbyist regardless of what you think they should be doing. It's the law and not what they were designed to do. I do not know about the rules in European countries however. Perhaps they are able to do whatever they please but it not the case in the USA.

    If you want to do lobbying, maybe you can operate a taxable SCI company and pay taxes. You would earn money through sales or services and then spend the leftover profits on lobby activity. There would be no problems from the IRS considering you a charity that shouldn't be in the lobbying business. Or, just directly open up a full time SCI lobbying service for vendors and pay your federal and state income taxes to avoid any trouble. Both would be legal but you'll want to consult an attorney for the business plan formation and your charter to comply with federal law and whatever state laws you have. The "Chaz's Lobby Service" is born. With the political climate for the past decade and foreseeable future, I have no idea if there could be any success. Congress is a total complete MESS (has been and will be...) I personally do not know of too many people that think federal lobbying for SCI will bear fruit from Congress with the current conditions. The NIH will not reallocate designated funds from lobbying. If you think lobbying is a good idea, by all means you could and should be doing it every day at the Capital. You could gather people to do lobby work in their spare time making calls and sending letters about upcoming legislation.

    You can contact the NIH to get all the breakdowns of categories for SCI and the funding allotted since it appears nobody has the figure you're asking about and looking for. (I assume nothing in the LINKS I gave you is what you are wanting either). They also have information about patient advocacy committees that may already have a SCI component built into them. I don't know anything about their selection process or who is on them right now. You can ask the NIH about those kinds of opportunity when you contact them.

    Also, Jim may have information on New Jersey state budget for SCI and Matthew or Rob has more on Minnesota state budget for SCI and lobbying. Sue P. can give you more info about federal funding for CDRMP or DOD budgets for SCI. Their knowledge will help you a lot.

    Yes, I've been in Washington DC with my husband and son on a couple occasions but I'm probably not the best person to ask. Sorry I don't have more on the subject, it's just that lobbying in the District of Columbia really isn't my personal forte' due to my remote location, budget, time and lack of experience/interest. With living in a Republican state, I was lucky and got both Senators to stand down on their party vote in trying to defeat the CRPA. (It was probably considered pretty harmless with no money attached to it). You would make a great lobbyist up on Capital Hill and you should get started right away. It would be nice for you to attend a couple political rallies with both parties to ask all the candidates where they stand on funding for SCI. Maybe you could even get on national TV for added publicity. The timing for you to go is now! Good luck with it.
    1. That's nice of you stating that I would make a great lobbyist although your tone is pure sarcasm.
    2. I have been on national TV lobbying for the CRPA- which was distributed and watched by over 15 million people. Further, I've also been on local Massachusetts TV several times.
    3. I'm currently an advocate/lobbyist for legislation in Massachusetts. I've helped coordinate rallies and actually was an initial member of 'Cure Paralysis Now' before a name change to u2fp.
    4. I've attended multiple rallies.
    5. I also know a lot more than you think about the passage of the CRPA (which was renamed).

    I don't think people should feel scared to ask legitimate question. I asked you legitimate question after I read an article. If you don't have the answer – that's fine.
    Your tone consistently comes off as condescending. Is this something that you intend or does this come natural? I'm sure there are other people that are on this forum were afraid to ask questions because they may be mocked or treated like children.

    I appreciate the articles that you have posted. We need people like you to do this. We had people in the past like Max and Manuli. I don't know where they have gone. After poking my head in this forum after a hiatus I can see that the community has never been more fractured.

  5. #25

  6. #26
    I mean no sarcasm at all. I've done my level best to answer your questions and provide you with whatever links I could find. You do have a history of getting things accomplished and I know that. If I have not answered your questions sufficiently, you can ask someone else for their advise and whatever links they have. I don't know what else you want me to provide for you, I'm obviously not saying what you want to hear.

  7. #27
    Senior Member lynnifer's Avatar
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    Max passed many, many years ago. Like most of us will from this living hell.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  8. #28
    Quote Originally Posted by tomsonite View Post
    I have met people as high as T9 who have some level of LMN damage. Any injury below that point is much more likely to have LMN damage.
    An often overlooked point is that LMN damage can occur to specific muscles at any level of the spinal cord. For instance, someone with a C5 injury may sustain LMN damage only at the C5 level. Thus, their legs and trunk may respond beautifully to FES or some other kind of electrical stimulation, but because the lower motor neurons at the C5 level were damaged, their triceps will not respond to any type of stimulation, or have a greatly reduced response. This is also a big problem for people with damage from C3-C5, as the LMN that controls the diaphragm can be damaged or lost. Thus, their arms and legs may respond to stim, but the diaphragm muscles will have a greatly reduced or no response at all to stim. It is a rare but very devastating situation.
    Thanks for the clear explanation.
    As I understand the area of neuron replacement has very little research going on and we should push for more research in that area.
    If I remember well not long ago Wise was setting up a conus injury model in rats...
    In God we trust; all others bring data. - Edwards Deming

  9. #29
    Quote Originally Posted by lynnifer View Post
    Max passed many, many years ago. Like most of us will from this living hell.
    I have several fiends on FB who have died because of SCI complications... One is Leo.
    We should be more fierce in asking for a cure, but as Chaz pointed out our community has never been more fractured. We need to fix that first.
    In God we trust; all others bring data. - Edwards Deming

  10. #30
    Quote Originally Posted by lynnifer View Post
    Max passed many, many years ago. Like most of us will from this living hell.
    Oh man. We need something to come our way.

    We need able bodied folk who will back up when we are down, fight in DC, and organize. We are dying and so many are turning a blind eye. Often it's the nonprofits that even represent us. Leo tried to start a watchdog spreadsheet of all the nonprofits that represent spinal cord injury but only really serve a token person. We reached out but so many didn't answer. I wish I had my health to get rid of the happy cripple paradigm and focus on biological cures.

    If i've learned anything we are not advocating enough – we are not getting enough funds – not enough people are supporting us to get these funds -- so many people become complacent and accept a condition that is horrific beyond measures. Complacent or just downright exhausted? And right now I'm in the category of the exhausted.

    The reality is that we are all facing a shortened life. Chris Reeve didn't put up with all of the BS. It seems that there's so much BS science and it takes too many years to know that were being fooled.

    How do we reverse this for the future?

    How much money are we getting from the NIH compared to MS? I don't even know this... does anyone else?

    I wish more doctors would chime in. I wish Dr. Young would start to poke his head in again. We all don't have to agree but he had a strong opinion. Just miscellaneous thoughts.."
    Last edited by Chaz19; 02-11-2016 at 07:00 PM. Reason: Weird. Formatting.

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